Theme
3:55am
April 26, 2015
Delirium dreams, and question about objects not behaving as they should in dreams
Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and thither [E E E E E–]
And yon and yon [B B– B B–]
And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]
And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]
And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]
Repeat infinitely and rapidly in a chorus of bass voices, with cartoonish things that look like men in top hats but ain’t so, in repetitive motion coming from the hats, and you could get one of my delirium dreams from the hospital.
I don’t know why I find things like this scarier than nightmares of the usual sort, but I do. A lot of my more ordinary nightmares still have to do with ordinary objects not behaving in ordinary ways. My brother told me he once had a, nightmare where turning off the tv with the off knob wouldn’t turn it off and neither would unplugging it. I instantly knew why that was terrifying. More terrifying than getting chased by zombies, which has happened to me a couple times in dreams.
Also note #actuallydelirious tag. Because the #delirium and #delirious tags are full of delirium as a metaphor, or else references to the Neil Gaiman character Delirium.
Posted to #actuallyautistic because I’m curious if the kind of dream my brother had is an autism-specific form of nightmare, a neurodivergent-specific kind of nightmare, or a nightmare no matter who has it. I have reasons to wonder if dreams of objects behaving in ways they shouldn’t are scarier to autistic than nonautistic people, but no evidence either way.
9 notes
4:18am
March 22, 2015
Recurring Nightmares
Screensavers in my brain
I’ve seen that one before
Could you please load
Another one?
Screensavers in my brain
I’ve seen that one before
Could you please load
A less disturbing one?
9:47pm
September 29, 2014
That Dream Where I Stopped Fearing My Feelings
A river flows away from all the stones
That hold me on the ground beneath my feet
It carries in its current more unknowns
It holds me in its arms, and moves so fleet
So fleet that I can scarce come up for air
No chance to grab onto the wall of rock
I must allow the river now to bear
My flailing body far too weak to walk
I float away until I reach the sea
I have no means to keep my head afloat
The waves of feeling lash and flail at me
And I will drown, the water fills my throat
But all at once, I let the waves crash through
And gills appear where only lungs once grew
[Also at my main poetry blog, which has a comments section.]
8:11am
June 14, 2014
I hate cat death dreams. I get those sometimes. It’s hard to sleep again after that.I’m sorry you get them, too. This one was really terrible because my dad and his wife’s family and my aunt were in it, and they were all really flippant about it. Like, “Oh, if that cat dies, you can get a new one!” and I said, “I barely even got to have him with me for more than a year!” and they’d say, “You know, I once had a cat that died within a year.”
The place I contacted about transportation to the vet replied once and then not again, so I think I might call.
Try to snuggle with Lovette, sometimes that helps after a dream like that. Fey is on my lap right now, she’s kind of obstructing my view of the computer screen and trying to purr in my face.
7:03am
January 16, 2014
One of those happy ending nightmares.
I’m sitting here with an extremely snuggly Fey for the moment. But I just had a nightmare of a type that’s extremely common for me.
In that type of nightmare, I’m very far from home and want desperately to get back home. But whatever I try doesn’t work. Either I drive endlessly in circles, I don’t catch my plane or the plane takes me to a different place, or whatever magic or advanced technology I’m using (depending on what exists in the world of the dream) doesn’t work. Or else I just stumble around too sick to figure out anything, sometimes that’s sort of like being delirious except in a dream, other times that’s being too nauseated to think straight.
This particular dream was a combination of those things. I was supposed to use a magic teleporter to get home, only I was too sick to get out of the bathroom in order to use it. And there were other problems too, where various elements involved in the magic of the magic teleporter weren’t working properly. (Because even magic has rules, and limits.)
I was so happy and surprised when I woke up and I was home, and in bed, and everywhere I’d been so desperately trying to get to in the dream. Then I discovered why I was sick in the dream: I’d overslept the phone call that tells me to take my butt pill for nausea, plus I’d slept so long I hadn’t been able to press the accordion on my g-tube drainage bag (which in practice always means lots of nausea… fortunately if I get nauseated enough it usually bleeds through into my dreams and eventually wakes me before something like an aspiration can happen first). Plus my lungs hurt and are full of crud, which also happens quite often if I oversleep. And I accidentally slept with my neck flopped over (happens a lot, because I sleep sitting up at all times, I never lie down for any reason ever) and now my neck hurts about as much as my lungs do.
But there’s a cat.
And I’m at home.
That’s the happy ending to the “I can’t find my way home” nightmares, always: I always get home when I wake up. Also, some of the nightmares involve trying to find my way home to places I don’t live anymore, or places I have never lived, or even to places where I’m not quite sure where home is, and it’s especially relieving to wake up from those – once I work out where I am.
Oh I know I haven’t been posting a lot lately, but I’ve been crocheting a lot and it’s hard to crochet and type at the same time. I’ve noticed that the better the yarn I crochet with (especially the wool yarns), the easier it is to crochet. I was struggling for awhile with cheap acrylic yarn and tried some wool yarn and it was so much easier. (I have a lot of yarn people gave me when I was learning to knit, which never panned out. It’s too easy while knitting to turn everything into a knot that you can’t get out of, and I don’t know how to “fix” it when that happens, and it got too frustrating, plus it was hard to coordinate the two needles at once as opposed to one. I might try again someday, but right now I’m sticking with crochet.
And when I’m crocheting, it’s easier to watch movies than scroll through tumblr or type anything at all.
5:26am
December 30, 2013
This is a rock a friend gave me to prevent nightmares. It’s not the same as hers – it’s the same kind of stone, but it hasn’t been used for that purpose yet, and using it is what makes it that way.
To make a stone that works against nightmares, you hold it in your hand when you think you might have nightmares, or after you wake up from them, and you think of it as protecting you from the worst of them. Even if you have nightmares, you wake up to the stone in your hand and you feel comforted that it’s there. After awhile, these feelings build up into a sense that it does protect you from nightmares, and that ends up helping you.
You can do it with any rock, or any object, but it’s best to use something that has good associations for you, or at least avoid using things that have bad associations. Because the associations you have with the object are the most important thing in all of this.
For instance the scarf my mother sent me helps me handle situations better where I might become delirious, because I strongly associate it with a story I wrote to deal with delirium. So now that I might become delirious, I’m wearing the scarf and it makes me feel better. And I associate wands in the Harry Potter world with strength and protection, so holding my wand makes me feel strong and protected. Objects build up associations all the time and you can use those associations to work for you rather than against you.
This works especially strongly for me because I see the world in terms of sensory and emotional patterns, and easily connect those patterns to specific objects. (Both associations I’ve built up myself, and associations others have built up and made me aware of.)
6:11am
December 27, 2013
fuck me
i just read a news article about a boy and his father who died while cave diving. one of my worst fears ever. i am panicking even though im safe in my bed at home. im going to have nightmares. gah. anxiety. panic. stahp.
Weird, that’s one of my worst fears too. The whole idea of those deep underwater caves is beautiful to me but also utterly terrifying to think of diving in.
6:27am
December 21, 2013
What I think when I see twenty bazillion posts about the JRC on my dash.
Close the Judge Rotenberg Center. For the love of everything holy, close the Judge Rotenberg Center. Stomp it into the ground and dance on its fucking ashes.
But.
You won’t be done.
You’ll just have eliminated the most obvious of a huge number of places that torture and abuse their patients in the name of treatment.
Skin shock is showy and scary and it makes a good story and it makes it easy to see what is hurting people.
But people can be hurt just as bad or worse without it.
People can be hurt just as bad or worse by places that don’t brag about the torture they inflict on their patients.
People can be hurt just as bad or worse in the institutions everyone loves to love because they’re so beautiful, they have such wonderful grounds, they seem so loving.
You can’t understand, maybe, why this is true.
You think, maybe, that abuse, trauma, PTSD, CPTSD, can be measured in volts.
It can’t.
You think, maybe, that the destruction of lives is proportional to the visible destruction heaped on the body.
It isn’t.
It’s so much more complicated.
I have a friend who gets really upset every time some over-the-top institutional horror story makes the news. So do I, for that matter.
One part of it is because, obviously, it’s horrible, and we’ve both lived through horrible things. She’s been to both state and private institutions (and found private ones worse, by the way, so much for stereotypes). I’ve been to private institutions and private residential treatment facilities and what I like to call ‘community institutionalization’… too hard o explain in such a short space.
I spent most of my teen years in the psych system (and to some degree was exposed before that) and sometimes in mixed psych/DD settings, and pretty much all of my adulthood in the DD system. I have physical disabilities that could easily put me in a nursing home, and developmental disabilities that qualify me for admission to an ICF/MR. Staying free takes up more of my energy than I’d like.
I’ve been abused and tortured and traumatized and almost-killed in all kinds of settings, inpatient and outpatient.
At one time in my life, with severe self-injury, I’d have made an ideal candidate for the Judge Rotenberg Center. I am not somehow different from people who go there. You’d be surprised at the people who go there and how not-different they are from many people you’d imagine would never go there.
(That’s true of all institutions. The people who live inside them, and outside of them, are identical in every way. The only difference is how the support takes place. When it’s support at all and not just hell on earth.)
Anyway.
What I want to say is.
One reason that my friend and I get upset by these stories is because we’ve lived through some horror stories of our own.
Another reason that we get upset by these stories is this fear we have, that we don’t think is irrational at all.
We fear that when people focus on the outrageous, the flamboyantly awful, then they won’t see the way the outright ordinary, even the seemingly wonderful, can do the same degree of harm, or worse.
The worst harm in institutions is, by the testimony of many, many inmates, not just the physical torture that takes place in some places – sometimes above-board, sometimes secretly. Often it’s things you can’t even name. Those things are happening in the JRC too. Those things hurt people there as much as the torture does. Nobody is doing a huge campaign to shut down those things.
Many people, if the JRC is closed, will simply be sent to other institutions.
They will then be told that they are lucky and that those other institutions are better.
They may come to believe those other institutions are better.
Those other institutions may actually be better. But they may not be. It may just be that the badness has seeped down deep into some underground place where you can’t count it, can’t name it, can’t even describe it, and therefore it…. isn’t there.
And they will continue to get hurt by that. They may not realize they’re getting hurt by that. They may attribute the hurt to themselves, to their mental illness, to anything but the environment that is causing or contributing to it.
And that hurt may be harder to recover from than the JRC.
How do I know this? Because while I was not in the JRC, I was in mental institutions that physically tortured me (not with skin-shock), and was then moved to a 'better’ place that tortured me in harder-to-explain ways, and hurt me in deeper places, and I learned to say and believe how 'better’ they were while living how worse they were deep down. I still live with how worse they were.
And I know many other people who have the same story to tell.
And I know that unlike me, many people who live at the JRC won’t be able to escape the institutional system the way I was. My situation was unique to me. I didn’t get out because I was better off disability-wise than others, I got out because I was in a particular, unique set of circumstances. The difference between people on the inside and people on the outside is not their disability.
But once you’re in a long-term institution, it’s harder to get out. I was lucky, I was usually in a string of short-term institutions (even if I spent longer time periods in them than other people there), then when I was in a longer-term one, my residential facility closed and it became useful to them to decide I was recovered enough to leave, and to “transition” me to a “less restrictive environment”. Which was still a hellish environment, mind you, but more chance of freedom, there, too. And I had people around me savvy enough to advise me how to take the chances I had.
And most of the people in the JRC won’t be leaving to freedom, if it gets closed. They’ll go to other institutions. And however grateful they are to be out of the JRC, they will get hurt in those new places. Because that’s what institutions do. Invariably. You don’t have to know you’re hurt to get hurt there. You don’t have to understand how deep the hurt goes, to get hurt there. You just have to be there. And you’re often the last person to know how deep it goes, right down to the level of your self and identity and everything important to you. You can get turned inside out without anyone laying a finger on you.
Nobody will ever be able to pinpoint the institution that inflicts the worst of this sort of damage on its inmates, because this sort of damage is, by its very nature, secretive, even from the person it’s being inflicted upon. And because nobody will be able to pinpoint the worst of it, there will never be a massive, targeted, decades-long campaign to close the worst of these institutions. Anonymous will never catch on and take part. The world will not be outraged by the damage inflicted, no matter how devastating.
And if the people damaged by these institutions show that they are grievously psychologically injured by these institutions, people won’t connect it to the institutions. They’ll connect it to the nebulous concept of 'mental illness’, and quite possibly try to construct more of the exact same kind of institutions to deal with it. Nobody will notice that the 'increased mental illness’ is correlated with the institutions themselves. Nobody ever does notice.
Nobody catalogues this kind of damage. Few people study it. Few people understand it. Few people can see when and where it is happening. Few people can understand the damage in the first place. Most people who describe the damage won’t be believed.
Worse than merely not being believed:
When we describe the damage inflicted upon us, we are invariably described as ungrateful for the advantages that we had in not being in “a place like the Judge Rotenberg Center”, or not being in “a state institution”, or not being in a place that the world universally recognizes as horrible. Because some of the worst damage is inflicted on us in places that other people see as wonderful.
They will ignore the abundant testimonials by ex-patients who have experienced a wide variety of institutions. There are tons and tons of people who have been to both state and private institutions and found the private ones immeasurably more damaging, because the extra funding means extra ability for staff to mess with the heads of the inmates. There are tons and tons of people who have been to both state institutions and group homes and found the group homes immeasurably worse. There are tons and tons of people who have been to both locked private traditional-institutions, and unlocked residential facilities and group homes, and found the residential facilities and group homes immeasurably worse. There are tons and tons of people who have been physically tortured at one institution, moved to another institution where no apparent physical torture was present and found the second institution immeasurably worse. There are people who have been moved from 'bad’ institutions everyone loves to hate, to wonderful paradise-like 'intentional communities’ where they had, in the eyes of others, everything they could possibly want, and described how much more horrible the intentional communities were, the ones formed with the best intentions of parents and staff.
People ignore this.
People ignore this completely.
No, worse.
People ignore this and they utterly disparage any current or former inmate who says these things. They say we don’t understand what we’re talking about. They say we have no vision. They say we have no comprehension. They say we don’t understand how good we have it.
And it’s even worse for people who have only been to the 'better’ (in the eyes of the public) institutions, and complain about how awful they are. They’re told that they don’t understand how good they have it, only much worse. And they are told they should be grateful for what they had, that they wouldn’t last a day in a 'real institution’.
Hell, i’ve been told I haven’t been in a 'real institution’ just because I was in locked, private, short-stay institutions a lot of the time. (And one private long-stay institution that was on a ranch in the country so it didn’t count as an institution, somehow.) Never mind that, at the time, I was referred to as institutionalized by everyone in the system, including people in these institutions… apparently it’s not an institution until it’s a big-campus state institution.
So people who’ve only been in much fancier, much 'better’ institutions than I’ve ever set foot in, are told this only ten times worse than anything I’ve ever gotten for talking about my experiences. Especially if they’ve been in the pseudo-utopian farm communities, or the 'intentional communities’, or things like Camphill, which are all billed as not institutional somehow even though they totally are. You can’t change an institution by changing the shape of the building and slapping on a new coat of paint.
Anyway.
People who have been through the worst kinds of hell that institutions can provide are not believed, because the worst kinds of hell that institutions can provide are not things that people outside of institutions can understand in any way. People outside of institutions want the blood and gore and skin shocks to prove a place is horrible. They don’t want to understand that there are things more horrible than any of that. They don’t want to understand. They just don’t want to understand.
And people in institutions often don’t want to understand either. I didn’t want to understand what was happening to me. I wanted to believe that now that I wasn’t being tied down and tortured on a daily basis, then I was free. I wanted to believe that really badly. You have a vested interest in believing you’re someplace better now, that things will get better. Sometimes believing things are better is your only defense against how awful things are.
But once I really got out, and I had to deal with the intense emotional and psychological injury I’d been done by all of these places, the truth gradually began to dawn on me. It’s easier to heal from physical wounds than it is from psychological and emotional wounds. It’s easier to heal from the obvious horrors than the hidden horrors that lurk behind the scenes, turning you inside out and upside down, piece by piece, one bit at a time. You can heal, but I can tell you that it’s not being tied down, not physical or sexual assault, not even the horrifying restraint practices I sometimes endured, not the physical pain, that continues to haunt me. I mean, it does, to some degree. Things like that always do. But there are things that have damaged me deeper, in ways I can’t even articulate.
And my friends and I, when we see coverage like this, we’re so afraid.
We’re afraid of the 'better’ institutions.
We’re afraid of the public’s idea of what a 'really bad institution’ is.
We’re afraid of some of the disability community’s idea of what a 'really bad institution’ is.
The JRC is a really bad institution. It’s doing that horrible kind of damage at the same time that it’s doing the physical damage. I can see that. Because it’s got enough funding, it can really fuck with people’s heads.
But you could force the JRC to remove every piece of physical punishment it owns, even restraints. And it would still be horrible. It could even become worse. Because when places can’t focus on hurting your body, they have more time to focus on hurting your mind. And hurting your mind does the most lasting damage there is.
The JRC needs to be shut down, period.
But there are places just as bad that will never be shut down if we use the JRC as the model of what the worst kinds of institution look like.
And there are places even worse that will never be shut down either.
And the worst places in the world, generally, are the same ones that will get propped up by the shutting down of the places the public has the most visceral unpleasant reactions to.
There’s problems in the disability community, too, and until they’re exposed for what they are, there will be a lot of difficulty changing things.
There’s… a lot of disabled people out there who engage in the completely unproductive practice of competing to talk about who stayed in the worst institutions, who had the worst treatment.
Understand that when I’m talking about the worst institutions above, I’m not talking about the worst institutions in any kind of competitive sense. I’m talking about, the worst in terms of the overall amount and kinds of damage done.
I’m not saying that there aren’t people who had worse experiences in state institutions than private ones, or that there aren’t people who had worse experiences in traditional institutions than in pseudo-utopian farm communities. I’m not trying to negate any one person’s personal experience. I’m just trying to explain… things are not what they seem, what everyone believes to be true is not necessarily the truth.
But I’ve seen disabled people who compete with each other about things like this. They say that they, unlike so-and-so, had experience with REAL institutions. Or they, unlike so-and-so, had REAL bad experiences. Or they, unlike so-and-so, were REALLY traumatized by what happened to them. That because they stayed for months rather than days, or years rather than months, their experiences were automatically worse and more deserving of recognition. And there’s… absolutely nothing productive that happens there. That’s ego-driven bullshit. It’s not activism, it’s not helping anyone at all. It’s a competition in self-pity.
So understand, again… when I’m comparing things, I’m doing so not with the aim of undermining any given person’s experiences in their own life. I’m doing so with the aim of showing people things they don’t want to see. I’m saying that what most people says is best, in terms of institutions, is often the worst of all. That often, the most damage is done where it can be seen the least. People have to understand this if they’re going to have any hope of actually reducing damage.
So close the JRC, close it over and over and over again until it’s really damn closed.
But… don’t focus on it to the exclusion of places just as bad or worse that don’t necessarily look as bad on paper.
Understand that your visceral reaction to the idea of skin shocks doesn’t make it the worst possible punishment that can be devised. It’s a pretty diabolical physical punishment. But sometimes – no, more like often or usually – people are damaged worse by things that don’t touch them physically at all.
Your instincts here are not necessarily a good guide to what is truly awful.
And I worry so so much about what will happen to people after it closes.
And I worry so so much about people enduring unspeakable damage, sometimes far worse than skin shock would hurt the same people, in institutions considered progressive and even utopian.
(Trust me, behind just about every utopian institution lies a dystopia beyond imagining. And I worry about the “He loved Big Brother” effect obscuring people’s views of what actually goes on in those places.)
My worst nightmare. And when I say my worst nightmare, I mean, these are actually real actual dreams I have that are worse than any other nightmares I’ve ever had. They vary in content, but they go something like this:
I’m living in a place with lots of other people with disabilities. There are staff there. The staff try to give us every freedom they possibly can, at least as visible from the outside. In one of these nightmares, I’m climbing a tree, outdoors, and totally allowed to do so. But there is someone following along behind me to make sure I don’t get hurt. I feel like a child.
I feel like I’m suffocating. I feel like I’m suffocating in cotton candy. But I can’t point to anything particular that’s wrong. There’s this fog that lurks over the entire place. It’s white, maybe slightly yellow or pinkish white, but mostly white. And it obscures the ability to see anything. And it smells like sweetness. And it feels like death, in the worst possible sense. But you can’t tell where it’s coming from. It’s everywhere and nowhere at once. You can’t see it except in your head, and only out of the corner of your mind’s eye.
Staff are nice to us, in the same way that people are nice to young children. They giggle at us as if we’re cute. They hug us a lot.
They also make us do what they want us to do. It’s not possible to know how they do it. They don’t use physical torture or restraints. They don’t even always use drugging or anything like that. We just… somehow always end up moving in the direction that they want us to move in, so to speak.
When I wake up, I feel an intense longing for the place I just woke up from, just for a minute or two. And then I realize what’s going on, and I want to vomit over and over and over again until the experience is gone from my head forever.
This isn’t the best description, because the problems of these places can’t be described. I once spent six days in a place very much like that, though, and the sickly-sweet-death-fog clung to me for years before I could get it to dissipate.
Nobody will ever get the kind of backing to close a place like that, that they will to close a place like the JRC. Even though a place like that could potentially do more damage than the JRC, after a person is moved from the JRC to a place like that. And if we close the JRC, it’s quite possible idealistic people will be building places like that to take its place.
I can’t explain why it’s as bad as, ,or potentially even worse than the JRC or a place like it.
I can’t.
But it is.
Please trust me on that.
Please understand what I’m trying to say here, because it’s incredibly important, and not enough people are saying it. (And no, it’s not “don’t close the JRC” or “the JRC is good”. Somehow, people are really fond of reducing important, complex things I say to simplistic bullshit like that.)
I’m trying to say this, for the sake of all the people who won’t be helped if we focus only on closing the JRC.
Now I’m going to try to get some sleep again. I hope I don’t have nightmares.
ETA: Before anyone tells me, as they always tell me when I say this, that the Judge Rotenberg Center will call attention to the issue and everything will follow from there and the public will be interested in closing all the other institutions then, later, once we get to the JRC first, that’s not at all how I’ve ever seen it work, not with Willowbrook, not with anything. (And a friend of mine worked in a “good institution” that killed a former Willowbrook client, mind you. She got fired for trying to stop them from killing her. So she survived Willowbrook only to get killed by staff in a 'supported apartment’ group home setting. So… that’s a very specific example for a very specific reason.) The public doesn’t want to close all institutions when they hear of things like this. They want to make good institutions and then forget about the matter. And the good institutions can be worse than the old ones in many ways.
8:13am
December 20, 2013
For some reason my subconscious
Sees no reason not to give me these dreams that wouldn’t be out of place on Buffy. Like these monsters that couldn’t die and would hunt me down until I die. And meanwhile I searched Santa Clara for Anne.
And then I woke up, wrote all but the last word of the last paragraph, and fell asleep straight into another horrible dream, only this was a terrifying live-action video game, a common type of dream for me. Some kind of puzzle game set in a house where all sorts of beyond-awful beyond-impossible things were happening. Although I did escape to try to get to Anne’s house but never got there. I found a couple guys in a store who helped me play the game. Even though by then I’d turned into a monster that wanted to eat them. (I put a shopping basket over my face so I couldn’t bite.)
But in the end, through “remembering” the cheat-sheet through the game, I was able to grab the right items and use them right (even harder to do that than the THHGTTG text game) and was rewarded. We saved an alien cat from being possessed (long story) and she had the cutest teensiest talking kittens in the world, and let me snuggle them.
3:46am
December 16, 2013
➸ http://madeofpatterns.tumblr.com/post/70176463728/youneedacat-i-just-had-a-horrible-dream-that
I just had a horrible dream that I’m sure was PTSD-induced.
I was living in an institution. It allowed us a fair amount of freedom, for an institution. We could live anywhere on the huge grounds, in tiny houses or sprawling mansion-like houses.
I chose…
What happens to me a lot is that I wake up and I don’t feel like I’ve woken at all.
Like the feeling of the dream is hanging onto me in real life.
But that didn’t happen here.
2:36am
December 16, 2013
I just had a horrible dream that I’m sure was PTSD-induced.
I was living in an institution. It allowed us a fair amount of freedom, for an institution. We could live anywhere on the huge grounds, in tiny houses or sprawling mansion-like houses.
I chose one room of this enormous house that spread from the middle of the grounds, curving over, to one edge. I had all my stuff in that room and slept there alone. Nobody else but occasionally one woman, even slept in that building so I had the run of the whole place.
Eventually this one woman’s boyfriend started threatening her life. And then he started terrorizing me and many other residents. He’d break into our rooms, scream threats through the windows at night, etc.
Most were too afraid to report it, but I did. I kept telling them how many witnesses I had, but they kept saying I needed two people other than me, who’d seen and heard this stuff at the exact same time as me. I had a whole string of witnesses but it was always separately. Me alone, them alone, or me and one other person. So they kept ignoring me.
One day this man walked up to me and said, condescending-staff-voice, “I’ve been sent to teach you how to distinguish what is real.”
I was furious. I knew their rule was accept nothing as real unless it was confirmed by at least two people. I knew they were trying to prove the threats weren’t real.
He asked me, “How do you know what is real?”
I said, “You can never totally know. But if you see something, you can be pretty sure. If another person sees it, you can be even more sure. The more people see it, the more sure you are.”
He was nonplussed, to put it mildly, because now he had nothing to teach me. He said, “I’ll be frank with you. We are concerned you don’t know what reality is because you were once diagnosed psychotic.”
I said, “But everyone knows that was a misdiagnosis,” and was going to say that even if you’re psychotic you can still be right about reality, and then woke up.
I hate dreams like that.
6:01pm
November 19, 2013
Court takes couple’s children because father is transgender
Fuck.
this is literally my worst nightmare. This is why I’m terrified to become a parent. This is why, despite others telling my not to work so a damn hard, I tried and tried and tried for the whole past year to repair my relationship with my partner’s mother and stepfather. They finally disowned us only about ten days ago, and I’m SCARED. I was attributing it to my anxiety disorder, but now that I read this article, I know that my fear is valid. This is happening right now - and it could happen to any of my beautiful trans siblings.
See, this is why marriage equality isn’t the most important issue. This is why we’ve been shouting and stomping our feet and never. shutting. up. It’s because children are being stripped of their parents for no other reason than THEIR PARENTS ARE HATEFUL BIGOTS.
Daniel and Cindy are young parents whose world has been turned upside down because Daniel is transgender. He transitioned over a decade ago when he was 19, and few people know that he is transgender. When Daniel and Cindy decided to have children, they told Cindy’s parents that Daniel is transgender because they were conceiving in vitro with donated sperm.
And, I suppose, they must also have trusted that her parents would continue to accept their son-in-law.
This was a mistake.
Cindy gave birth to healthy twins 2 ½ years ago, and Daniel and Cindy and the twins have been very happy – except for one problem.
Cindy’s parents make rude comments about Daniel being transgender, and they do it in front of the twins.
Requests for them to stop are met with mirth.
Daniel and Cindy put up with this behavior for a long while, but as the twins are getting older, they worry that the negative comments are harmful, and they don’t want to be forced to try and explain concepts to their young children that are beyond their ability or need to understand – in vitro, transgender.
Daniel and Cindy made the difficult decision that the grandparents are no longer welcome in their lives.
The grandparents got angry and sued for custody of the children.
The twins have two loving parents.
Child Protective Services have never been called; there have been no police reports of abuse; neither parent has a criminal record.
Last week, a court removed the twins from their home and gave custody to the grandparents.
The reason?
Their father is transgender.
Daniel and Cindy are working with a lawyer to try and get their children back.
Will they get them back? Who knows? What we do know that the children have pulled out of their home and are living with two people who demean and ridicule their father.
Names have been changed, as the story hasn’t hit the news yet - offering the family privacy until they choose to take it public. more at the link above.Hey, all you folks, you 29,330+ who have reblogged our transawareness post - this is important.
This is why organizations like GLAAD and FCKH8 and HRC are so damaging. Because when they mock, misgender, ignore, insult, and silence us, this is the result. A loving, happy family that’s been ripped apart.
You want to do more than just reblog awareness posts? Stop supporting those businesses (YES, FCKH8 IS A BUSINESS) and organizations that try to shut us out and shut us down.
3:06am
October 11, 2013
My nightmares sometimes get very violent
And realistic. As in, the right degree of pain combined with adrenaline induced numbing for every single injury. If I die, that’s done realistically too.
Tonight’s nightmares involved…
Being shot at, and actually shot. My mom was shot too. I told her to get up and run for help and she gave me this irritated look and said “But I’m SHOT” so I ended up shaking my head, running around, knowing I was losing blood, trying to get the neighbors to dial 911. But no ambulances arrived. Just cops and more cops. And I died without learning if anyone saved my mother.
And then another one I was running with my brother on the side of Highway 17 and people kept trying to run us off the road. And then suddenly there was a flooding river by the road and the road was crumbling into the river and I was trying to stay off the crumbling part.
And then this pissed off looking dude in a beat up Volkswagen bus started ramming me with his car. He rammed me all the way down a side street. Then I realized this was related to a dream I had years ago (my dreams do that, they drop off and pick up again).
And then the cops came and arrested ME and told me they were putting me in jail. And my brother was arguing with them so they picked him up too. Meanwhile they were fighting with the pissed off dude but not interested in arresting him, he was one of their relatives.
And I realized I was dreaming and told them “hey I’m dreaming so none of this is actually happening” and they got very angry.
So the violence in these dreams was, weird cross of realistic and cartoon or movie violence, but the feeling in my body as usual was frighteningly realistic. I woke up in pain but not the same kind.
Other times my violent painful nightmares are different. The involvement or lack thereof of family has no actual meaning… If the nightmare is set in California there will be family, if it’s not there won’t be unless we are on vacation together.
The more interesting part to me is when the violence turns bizarre. Like being chased down the road by a giant egg beater. The kind with the crank. Whirring around in circles. Being hit by that thing and ripped to shreds hurt like fuck. I don’t know why sometimes it’s cars and guns, other times is egg beaters, other times is science fiction type violence.
But it always hurts. Plentifully. And the effect on my body and senses is always frighteningly realistic. Like why does my body know these experiences so well that it gets every little detail right? Like I look them up later and is accurate.
The scariest for accuracy is the nuclear dreams. Nuclear war or nuclear reactor accident. I’ve had those dreams forever and had intense realistic sensations (and seen things in other victims if applicable) that I’ve only then heard of in obscure interviews with people who worked cleaning up Chernobyl, or survivors of Hiroshima and Nagasaki. Sometimes I’ve had to dig through the records to find the exact thing but it’s always real. Always.
My only assumption is that I’m good at unintentionally picking up patterns in the world and that extends to patterns involving what different forms of violence feel like in your body, including radiation? Idk. It feels very personal and then I learn is actually what happens. I knew how to tell that there was a tornado watch in effect from a dream about being homeless during a tornado and dying while hiding in a bus stop. But that at least make more sense because I bet humans like most animals have instincts for tornados. No such explanation for severe radiation…
I wish my dreams would be about something nice. I mean sometimes they are. But sometimes I don’t want to go back to sleep even though I’m tired because usually if my dreams are super violent they stay that way all night. Wake up go to sleep get immersed in the same old crap. Often in the same geographic area, and I rarely enjoy traveling to California in my sleep.
12:56pm
September 11, 2013
Sick nightmares
I keep having weird nightmares where I feel terribly sick and weird things happen and everything I try makes it worse… And then I wake up feeling terribly sick.
Usually it’s nausea because gastroparesis. This morning it was combined nausea and kidney pain from holding urine too long. I had this epic feeding tube nightmare the other day in which terrible things were happening to my tube and I was floating down all these rivers, trying to find help. I never did. In fact at the end of the dream I was trapped in the middle of nowhere in China, fearing I would die before I could find medical help. But I woke up and the problem was just I needed to squeeze the accordion on my drainage bag. As soon as it did it sucked everything out of my stomach pretty fast. Problem solved.
But this morning I really thought I’d throw up, I tried everything, turned out I needed to take a crap. And the kidney pain went away a little while after I urinated and put a bunch of water in my j tube. Obviously if it stuck around I would have gotten help. But I often get kidney pain if I get that combination of slight dehydration and not urinating for too long. So I didn’t automatically run to the doctor over nothing. I sure hope it’s nothing as usual… I really need a few months where I don’t go on antibiotics.
But I’m now sore in my upper right back… Probably the old post-cholecystectomy syndrome but knowing that doesn’t make it hurt less.
I only got three hours of sleep last night, and one more this morning off the bipap. Those three hours were interrupted twice by that thing with the awful dreams and waking up feeling sick. I felt so awful I took my temperature when I woke up but it was its normal slightly low self… 96.8.
Now I’m feeling less than great but better than horrible. Ragged and in pain and brain fritzy.
6:30am
July 14, 2013
I think I may have written the following paragraph ten years ago?
“I have a recurring nightmare. I am in a beautiful building with a hushed, playful atmosphere. I have been there as long as I can remember. Everything I could possibly need is there. There are no locks on the doors. People follow me everywhere, but just out of sight, to give me the illusion of freedom. They want only the best for me. I can go outside and play in the woods, and I climb trees. And they treat me like a child. Everything is controlled perfectly. Nothing seems to be wrong, but nothing seems to be really RIGHT, either. Everyone is very sweet and very kind and very nice and very forgiving, but there is no freedom. Anywhere. This makes the apparent happiness of the place empty, shallow, and false. That, to me, is the essence of the intangible horrors I fear. Only when I wake up from this nightmare do I realize it’s a nightmare, and that in turn makes it all the more frightening.”
Now put that beside the “dementia village"and what do you get?
And yes seriously I’ve had that nightmare for ages, and it’s probably one of the worst nightmares I’ve ever had. I believe that I have had that nightmare because I’ve experienced a wide variety of institutional settings, both as a patient and a visitor. And the most terrifying ones are the ones that resemble normal homes, that slide into that almost-right but horribly wrong territory, that is somehow so much worse than being locked up and tied down and tortured.
People who have not been in these situations rarely understand. People who have been in these situations but haven’t had the chance to assess the damage, also often don’t understand. It’s so EASY to say that you can measure how bad an institution is by counting the bars in the windows, the maggots, the starvation, the brutality.
But places like that are honest. You know what’s going on. And you know what they are. Which means you have your guard up. You can defend yourself.
I get horrified whenever people start trying to build more humane institutions. Because you can’t build a humane institution. It’s not possible. You can only build an institution where the ugliness is covered over. Where the inmates won’t have their guard up unless they know exactly what to look for.
I know a lot of people who’ve been transferred back and forth from state institutions to private institutions or group homes. Know what most of them say is the worst? Private institutions or group homes.
I’ve been to a variety of private mental institutions, a psych ward in a general hospital, a locked special ed school, and a residential treatment facility, as well as a lot of settings people wouldn’t even recognize as institutional if they didn’t understand institutions come from power structures, not the shape of the frigging building.
The worst was the residential treatment facility. It had no locks on the doors, just a bell that rang if you left. Although it was in a rural area a so if you ran away they’d just drive around and find you long before you could get anywhere – then berate you for attention seeking behavior, because you couldn’t possibly want out of there?
It had a duck pond, and horses, and goats, and cats, and dogs. It looked like a house. There were no restraints. You had access to the kitchen. The only thing locked was the med cupboard.
Sounds ideal, right?
No. I’d rather have gone back to the place where they tried to kill me.
Because this place used medication and behavior mod, and other restraints on your mind, to control you. Better by far to get tied down and beaten. (Well they beat me at this place too. But that was the best of the abuse.)
After that I went into what I later called community institutionalization. I lived at home. But aside from that, I was driven to a special ed school and day programs and other disabled-people-only activities. In a mental institution you generally walk between the different parts of the place. In a "community institution” you’re driven. But the power structures are little different.
End result? I can’t tell you when I got out. I was eased out so gradually, that it’s like telling the difference between blue and indigo.
Which means that for many years, I still believed I was locked up even when I wasn’t. Which is EXACTLY WHAT THEY WANTED. The whole point of my rehabilitation into society was that I carried the institution around in my head to control my behavior and make sure I didn’t do anything too awful by their standards. To keep me always afraid.
Or, in the words of a psychologist who treated me at the residential facility, his goal was to climb into my head and never, ever leave.
Do you understand now why I think the pretty, home-like institutions are generally worse than the ugly, honest ones?
Why I might have JUST A LITTLE trouble with people building a whole town for cognitively disabled people and pretending is a regular town but everywhere is really staffed by caregivers who aren’t honest about being caregivers?
I swear when people try to build humane institutions for disabled people they fuck up worse than anything they could do without even caring for our well being.
Because they think lying to us is okay. They think permanently confusing is about what is reality and what is unreality is okay. And they ESPECIALLY seem to think that inducing reality confusion is best done to those of us most prone to confusion in the first place.
What do they think will happen when the inmates discover what’s going on and want to leave? They’ll lie to them. And they think that’s okay.
I wish they could understand they are doing a kind of violence that people trying to dream up torture methods on purpose could only dream of.
And they will never understand. And neither will most people.
And btw I also hate all the pseudo utopian farm communities they make for DD people.
When we’ll they ever realize that disabled people of all kinds do best living the same way everyone else in our cultures live? And that it’s perfectly possible to do so? Without making a fake version abd lying to us about it. The real thing is possible. And if they put half the money and time and effort into making that possible, as they do pretending that we can only live in special places just for people like us, then everyone would be much happier and healthier?
(And yes, disabled people sometimes choose to live together. Nondisabled people sometimes choose to live together too. Neither one is the same as an institution. Some disabled people think only institutions will work if they want to live with other disabled people, but that’s because everyone uses that as the model for how all disabled people should live. Nobody would choose to make institutions if alternatives were available, because there’s nothing that can be done in one that can’t be done better outside one. And, for instance, the population of DD people inside and outside every kind of institution including group homes, are totally identical. There’s no difference. The only reason people think there is, is that’s the illusion institutions have to create in order to stay in business.)
Anyway. Seriously. The dementia town is exactly my nightmare. Exactly. There’s no difference.
What I hate is the way the nightmare sucks me in. It’s like falling into whiteness. And sweetness. Saccharine sweetness. And it makes me confused. And it makes me sometimes, in the dream, think I’m happy, but when I wake up, it’s obits it’s anything but. I think it’s the remnants of institutions trying to call me back to them, but always failing in the light of day.
:shudder: